2014 NJCTS Children’s Scholarship Award Essay: “I Can Accomplish Anything”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

“l’ve been from the bottom of the deepest and darkest  abyss, to the top of the highest and brightest mountain” (from the book “Against Medical Advice” by fames Patterson and Hal Freidman). This quote is a great description of what it has been like living with Tourette Syndrome for most of my life.

Since my diagnosis at the  age of 3, my TS has caused me much trouble, stress, and difficulty, TS has caused me to be bullied, to get in trouble at school, and to have an almost impossible time focusing.  Good behavior? Sitting still? Forget it!  TS didn’t allow me to have it.

Tourette Syndrome changed my life by teaching me how to persevere and overcome very painful (almost torturous) life obstacles. My tics were very disruptive and painful for most of my childhood and early teens. For example, I would bite my thumb, my neck would twitch constantly, and I would scream in the middle of  class. My muscles would become exhausted, would  ache, and would  cause me continuous physical pain.

My sleep was impacted due to the muscle pain, tics, and exhaustion. I would lay awake at night crying because  I couldn’t sleep or was in pain. When I began taking medication as a young child, I had negative side effects such  as extreme drowsiness, weight gain, increased appetite, and loss of memory.  I also struggled with OCD, which played a big role in making the TS worse because I would feel the need to continue certain tics after the initial tic urge went away.

Along with the physical pain, TS hurt my social life.

Continue reading

Are you ready for #TSelfie on June 7?!

It’s been awhile since you’ve heard from me. That’s because, since November, I’ve been working nonstop to graduate collage! Last month, on April 24, I graduated and I can finally really call myself a teacher!

It was hard work. I had to go to my internship three days a week and work on my final paper as well. And that for seven weeks straight, after the months of hard work I had done already. But in the end it was all worth it, because I can now finally say that I’ve graduated from college! And I actually graduated early, as the graduation ceremony is on June 26, so I had until then to finish.

Right now I’m trying to rest as much as possible because I’m very tired. And I finally get to work on the Tourette-related things I’ve been wanting to work on for months, but I didn’t have the time or energy to do it up until now. I have quite a lot of meetings scheduled for TV shows and other media-related things, which is very exciting. I’m not going to be in all of them, but in my role as volunteer for the Dutch TSA I give them info and try to make sure it will be a nice and respectful show and it won’t be all about swearing.

Right now, I’m busy making plans for the European Tourette Day, which is June 7. Together with other organizations from the Netherlands and Belgium, we’ve thought of an amazing idea to spread TS awareness and I hope you can all help by joining in (all European organizations will!)!

We’ve invented the TSelfie: Tourette selfie. This is a selfie while winking (with one eye) and you have to post it on your social media accounts (Twitter/Facebook/Instagram) on June 7! Put #TSelfie and the website www.tselfie.eu in the same post and we hope we can get the attention of the media and of course, spread as much awareness as possible!

On the website, you can find info on the TSelfie and on Tourette, so it’s very important to add the website to your post. A lot of celebrities join us and post their TSelfie on June 7 and we hope to get a lot of Tourette celebrities to join in as well.

Call all your friends and tell them to post a TSelfie on June 7 and support Tourette awareness! You can follow us at Twitter (@TSelfie), Facebook (facebook.com/TSelfie) and Instagram (@TSelfie2014) for more updates on the TSelfie!

How are you spreading TS awareness this month?

It’s Tourette Syndrome Awareness Month! What have you been doing to spread the word about Tourette Syndrome?

Last year in my high school I spoke to psychology classes about Tourette’s and gave them a first-hand perspective of what life was like with the disorder. Although they were learning about Tourette in class, they did not realize that there were so many everyday struggles to overcome to keep up with the norm.

In addition, I created a proclamation in my town to officially declare National Tourette Syndrome Awareness Month (May 15 to June 15). This year, I hope to do the same by making sure that this month is again recognized by my township, school system and community.

I plan to speak in psychology classes again this year, since I received such a positive response to my advocacy last year. I advocate not only because it is important to spread awareness, but because just one person can change the view of others once they have the right facts and resources.

By educating other teens, it can create a chain reaction of awareness and I believe that is one of the most important steps towards eliminating bullying and misunderstanding of Tourette’s. Those who bully and tease are simply uneducated, and it is the job of the TS community to provide education to those who are ignorant about the disorder.

Advocating, walking for the cure, even having the courage to explain to close friends about the disorder are all ways in which we can spread awareness and educate people about Tourette syndrome. No matter how you choose to spread awareness, remember that every little bit of knowledge makes a huge difference toward a world of tolerance and acceptance.

Guest Blogger: Making my film about TS

bella

What Makes Us Tic is a feature-length documentary that aims to increase awareness and understanding of Tourette Syndrome. Through a variety of media including personal interviews, a short film, and an animated robot named R.T.S.T., What Makes Us Tic will illustrate what it’s like to live with Tourette Syndrome, and give audiences a good understanding of the disorder to help stamp out common stigmas and misconceptions.

The filmmaker, Bella Thomson (pictured in this screenshot from an earlier draft of the film), is a high-school student from British Columbia in Canada who has lived with Tourette Syndrome since she was 9 years old. She feels very passionate about raising awareness for the disorder because she’s experienced first-hand the ignorance and lack of understanding that so many people have towards TS, so she’s combined this with her love of film to create a documentary.

OK, enough with the formalities. I’m sure you’re wondering why any teenager in their right mind would attempt to produce a feature-length documentary, and have it finished before they graduate. Well, my best answer to this question (other than that I am just very ambitious) is that I am very driven in my passion to raise awareness for Tourette Syndrome.

To me, if society can come to understand afflictions like cancer or multiple sclerosis, then they can come to understand Tourette Syndrome, and know that it’s morally wrong to mock it, like it is for a lot of disorders or afflictions nowadays. I want people with TS to be able to feel comfortable being themselves, and not afraid of who they are. In short, I want to do my part to make a difference for TS, and I think because I’m still a student living with the disorder, that impact will be so much greater!

Continue reading

A preview of “What Made Mozart Tic”

James McConnel, a composer with Tourette’s Syndrome, has always believed that Mozart might also have suffered from Tourette’s. Not only that, but we can hear it in the music. In this film, James McConnel sets out to find proof that this was the case, and embarks on a journey to Vienna, Salzburg and back to London with some entertaining and unexpected results. Illustrated with surprising re-interpretations of Mozart’s work, this is a musical, personal and artistic journey, with a soundtrack by Mozart himself.

Poetry: “Stand Still”

Tic, tic, tic

They keep coming,

one right after

another…tic.

I can’t stop them.

I can’t hold them

back to where I

started at a

stand still.

Breathe.

Relax the muscles,

sore from the

movements are back.

A swing…

and a miss. Swing…

this one hits

an uncushioned bone.

“Hey!” “What?” “Hey!”

Yelling and blurting.

Sniffing and stomping.

I’m not in control,

like my brain has

backfired…again.

They’re sudden like a manic

episode is over.

Back to a

stand still postion.

Aching and tense,

it’s good to be

at a stand still.

Finished my junior year of college!

It is crazy to think that I just finished up my junior year of college. Next year is my last year, and then I am off trying to find a real job and an apartment, supporting myself. These past three years at Montclair have been absolutely amazing, and I wouldn’t trade them for the world.

I’ve gone through my ups and downs with my Tourettes, OCD and anxiety, but in the end, it has all turned out for the best. I’ve also had my struggles with friends, thinking I had found good ones and then realizing how wrong I was. But luckily I found my true friends along the way, and I am so glad I did.

This past year has been one of the best ones for me. I had all of my close girlfriends on my floor in my dorm, and I made so many new, amazing friends. I met and became close with one of my suite mates for next year, and she is a sweetheart. And, I finally turned 21!!

Next year I am living in an on-campus apartment, and am so excited! After a while you’re just kind of like, “OK, I’ve had enough of the dorm life and the horrible on-campus food.” Now, I am living in an apartment with three other girls, and we have a kitchen! I am so excited to have a kitchen, you have no idea. To be able to make our own food, I am just so happy and excited!

I am trying to think of what we need for the apartment, and the only things I can really think of is a coffee maker/Keurig, a blender and a vacuum. Whoops, oh yeah, and a lot of decorations! I’m sure as the summer moves on our list will grow. Oh yeah! I tried my first cup of coffee this year!! I am really starting to like It, the only problem is it makes my tics works because of all the caffeine. Thankfully not too bad, but there is a slight increase. I’m just making it a point not to drink it every day.

I decided to make my major just sociology, and what I want to do after I graduate is work for this company that is about raising awareness for TS. I would love to later on go and do my own thing and become a motivational speaker about what I have, but this I feel would be an amazing start (if I get the job once I graduate). After that I hope to become a novelist on the side, maybe write a memoir or an autobiography, and then novels on the side.

Now for all of you that are going into college, or are in college, listen up:

Continue reading